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The Story of Sebastian – Trisomy 18 TFMR

trisomy 18 tfmr

I am a TFMR mama. I am here to share my son Sebastian’s story.

At the age of 12 I would talk about getting married, having a home, 3 kids and owning 2 dogs. I met the love of my life in January of 2020. From time to time we’ve had our ups and downs but what relationship doesn’t? 9 Months into our relationship, in October of 2020, I found out I was pregnant.

I was on birth control (Depo Provera) for 5 years but decided to get off of it in the sake of my health. Over long-term use of Depo Provera there is a high-risk factor of woman developing osteoporosis. I was informed by my doctor that I should stop taking Depo because they never recommend their patients being on it more than 3 years. Over a long period of time of being on it I began to feel weak to the point I couldn’t carry a bag of groceries anymore, I had no strength what so ever.

6 Months later I ended up being 2 days late for my period and I just knew I was pregnant. I’ve always had a regular menstrual cycle and was never late once up until now. I went to a walk-in clinic to be 100% sure and I remember the doctor coming into the room and saying “Isis, you are definitely pregnant.” I was so happy that I immediately called my partner to share the news, but little did I know it wasn’t amazing news to everyone.

The first thing my partner said was ”We’ll talk when I get home from work,” and it wasn’t a happy response. I was so scared on what would happen when he got home and I was right to be so. When he got home, he said to me “Babe, you know what we have to do right?” I said what do you mean? He just threw abortion into my face and my response was to cry.

I am against abortion, always have and always will be. I knew we were young and weren’t the most financially stable but that didn’t bother me. I refused to get an abortion and that didn’t make him happy. He begged me for almost a week and I refused everyday. MY DREAM FINALLY CAME TRUE!! He was so angry with me; nothing was the same for awhile. I told him that if he wasn’t ready to be a father then he was welcome to walk out that door. I told him no matter what he does I’ll be keeping our baby whether he liked it or not. He accused me of being selfish and that I didn’t care about how he felt. He was wrong though, I felt guilty everyday during the pregnancy that I hated myself for having to put him in this position of resentment towards me.

A couple of months forward bringing us to Christmas day we had the worst fight ever, to the point we almost broke up. I was so scared I was going to lose him but I would do anything for my baby. Over time things got a lot better and our happiness for the pregnancy became 2 instead of 1. I was so happy that my partner had accepted us on being parents together.

We moved into a bigger place, we created a registry, we bought gifts and we received gifts. Little did we know this was all going to come to an end very soon. On March 15th of 2021, I got the worst news of my life, “Isis, we found multiple of abnormities on your anatomy scan.”

With me being a young first-time parent, I didn’t know what that had meant for me and my son. I asked the doctor “What’s wrong with my son?” I knew something horrible was about to be said- I couldn’t stop crying.

They told me my son had a lemon shaped head, flat head, clenched hands, hole in his heart, 2 cysts on his brain, clubbed foot and a spinal tube defect. I couldn’t believe the way the doctor had described my son; I was just traumatized.

I asked him what this meant and he said my son would have no quality of life and that the best course of action would be to terminate. I knew we had to terminate the pregnancy because I couldn’t live a life where my son would just suffer.

My heart just ripped out of my chest I didn’t know how I would tell my partner the terrible news. I immediately told him when I got home and he was devastated. We both knew without discussing it that we would both agree to termination- and we did.

A day later we had an appointment to sign all documentation in regards to giving the hospital consent to end my pregnancy. I didn’t know how to prepare myself, I just knew this wouldn’t be easy for me. Later on, we had a meeting with the genetics team and we were informed that they believe my son had Trisomy 18 and if not, there would be further testing done.

Trisomy 18, also called Edwards syndrome, is a chromosomal condition associated with abnormalities in many parts of the body. Individuals with trisomy 18 often have slow growth before birth (intrauterine growth retardation) and a low birth weight. (reference medlineplus)

We were told it would take 4-6 weeks for results to come back, as they need to test Sebastian’s brain and heart. As the brain is so mushy and soft, they needed his brain to sit in a special liquid which would harden the brain so they could do testing on it.

We had been given an appointment for March 19th at 8 am to be admitted in the hospital. During a painful day of contractions by son was born the next day at 4:44 am. Angel numbers what is the coincidence?

Based off how small my son was weighing (400grams and 11.5 inches), birth didn’t hurt at all. I pushed once and my water broke and he just came sliding out on his own without pushing. The minute he came out and I heard no crying I just felt so empty I couldn’t stop crying. All I could think about was “Why me,” “Why did I have to go through this?” I thought “What did I do so wrong that I had to lose my first child at 19 years old.”

It took me over 6 hours to hold my son, but it was the best decision I had ever made. I was debating for a week whether I should hold him or not based off how the doctor described my son and I was terrified that I would be traumatized.

My son was so beautiful- he looked just like his father. My partner has a skin tag on his left ear and so did Sebastian. He had his father’s nose as well. My god he was just perfect and so small.

Based off the doctor’s description, my son’s hands and clubbed foot were the only thing we could see. The thing I will never forget is how cold he felt and how non-developed he was. His head was so delicate that I thought his head would just snap off his body if I didn’t hold his head strong enough. It was just so scary.

After taking my time holding him, kissing him and talking to him, we decided to leave the hospital at 3 pm later that day because we knew the longer, we stayed the harder it would be to say goodbye.

I love my son and will always love him. He was my little boy. Fast forward to 6 weeks, I received a phone call form the genetics team and my son had been confirmed with Trisomy 18. They had told me my son most likely would not have survived past 30 weeks of pregnancy and, if he did, he would not have lived very long.

We knew just with that information what we did was the right decision for our boy. We knew that if we were to keep this pregnancy going, losing him would’ve been a lot harder for me mentally and physically. This has been by far the worst experience of my life and I will never heal from it.

What I would like to share with others out there who may have gone through or are going through something similar is, take your time! Please don’t let anyone rush you on your healing process. If you need time off work, take it. If you need time off from school, take it. If you just need space from others, take it. Please don’t isolate yourself from others because during this stage of grief you need to be around those who love and support you. Don’t let anyone say you’re a “baby killer” or give you hate speech on your decision, because deep down you know what you did was the best thing you could ever do for your child.

There will always be the feeling of regret somewhere deep inside you because I have it and it’s not easy. Everything you feel is completely normal and valid. Just believe that your grief will get easier over time and just know you’re not alone.

I know this must be hard to hear as it was for me but, this happened for a reason. We may not know what that reason is but God does have a plan for us all. Hugs and kisses to all the mothers out there who have angel babies. Know that you’re amazing and so strong. I hope that those who are reading this will start sharing their own story about their angel to the world. I am TFMR mama.

This story was submitted by Sebastian’s mama- Isis Green.

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